What I have found out is that people who have concerns about this proposed study (and me) have 1 of 2 concerns--1. Cost. It is expensive. It is patient sponsored, meaning I pay it. It costs $35,000 (!!!)2. Safety. That I'll save for tomorrow.

QUESTION I HEAR---IF THEY MAKE YOU PAY FOR IT, DOES THAT MEAN IT IS A SCAM?

I didn't know either. I looked it up, and found this answer ...

In some clinical research studies, the medical facility conducting the research pays for your treatment and other expenses. In other trials, you may be responsible for costs. Be sure to ask about possible expenses.You or your health insurer may have to pay for some costs of your treatment that are considered part of standard care. This may include hospital stays, laboratory and other tests, and medical procedures.

I don't want to pay for it! But I'm glad that this is something that is legitimate. Now to figure out where to fine the money!

They are real! That is great. They require 5 years of diagnosis. I first suspected it, had an MRI that looked suspicious, 11 years ago, but the final diagnosis didn't happen until less than 4 years ago. Will that rule me out?

I already had to call them to see if they will accept a person who will turn 66 in a month (their cut-off age is 65). That was okay...so we'll see...!